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Letters From Our Readers – Name Change Discussion Continues 2-28-07

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Give Me an "A"

I like the change to ME, but from a marketing standpoint, I'd love to see an A before it. AME for Autoimmune Myalgic Encephalopathy. If Autoimmune isn't diagnostically correct, is there another A word that is appropriate? That way it isn't all about ME. I can already see T-Shirts for fundraisers that say "AME For A Cure" to support fundraising efforts. What do you think? – dblos

Note: Very clever! However, it is unlikely autoimmune will be added to the name. (See the article "Why ME/CFS?" in this issue.) Maybe someone could organize a group called Advocates for ME (AME). Or maybe you can come up with another good slogan using just the ME. Anyone have any ideas?

 

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The ABC Disease

Please do not change the name to something like ‘ME-CFS.’ The fatigue is still in the name. It is what we hate about the present name. I really would like to see something like ‘Bell-Cheney Disease’ or to be cute, ‘Autoimmune Bell/Cheney Disease’ and then the initials would be as simple as ABCD! (Both men have been pioneers in finding ways to treat CFIDS.) We could use a little levity. This is a life-changing disease that limits us forever. – Anne

 

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It’s Really Happening!

I cannot begin to express my gratitude for what you provide to our community of 'invisible' sick people. I've had this disorder for over 22 years…One of the biggest hurdles in dealing with this disorder has been the ludicrous name. Now you all are really going to deal with it. My doctor has been referring to it as ME/CFS for some time, so I followed by doing the same. More recently I even dropped CFS, depending upon whom I was writing or talking to…While I realize approvals must be granted to complete a name change, I feel we are finally at a turning point in this regard. – Nancy

 

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How Do I Convince My Doctor?

I'm with you on just calling CFS M.E. from now on. It is so much more clinical and makes people take notice instead of just thinking and saying, "Oh, you just need more rest and you'll be fine"…My big question is: Is my doctor aware of a name change…[and] will he be able to think that the medical field is accepting of this in the United States? Thank you for the wonderful insight and hard work you do. – Charlotte

Note: Take your doctor a copy of the Name Change Advisory Board's Recommendation so he can see that eight of the country’s top ME/CFS researchers and clinicians unanimously agreed to call for the name change.

 

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I Prefer CFS

Personally I have never liked ME. I've always found it to be cold and scientific sounding. I prefer CFS. I also think that as the symptom picture of the illness can vary so much, yet fatigue appears to be one of the few universal symptoms, then the name is appropriate. Anyway, that’s my opinion. – Matt

 

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How About ME/CFIDS?

I totally agree with the encephalopathy vs. encephalomyelitis but, if we must keep the CFS, may we please keep the IDS as well? Having had this for well over 50 years I think the disruption of the immune system ranks right up there with the muscular pain, and the chronic fatigue. The encephalopathy by itself umbrellas practically everything else. Thanks so much for the tremendous service you are providing for so many of us. – Marnie

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